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It’s been almost six months since I was diagnosed with cancer. I had surgery that went fine, but my small cancer was a highly aggressive subtype, though thankfully no lymph node involvement. I get 12 weeks of chemo, 5 weeks of radiation, and a year of monthly infusions, after which I’ll take a bone-sucking anti-hormone pill for 5 years, maybe 10. I have a darling little blog under my name that I post publicly. I wash off the darkness and keep smiling there. I’m going to use this site to say what it’s really like.

Let’s first talk about how cancer and chemo make you feel. Chew up some aspirin with no water. You should experience an awful, bitter taste plus a dry throat and mouth. That starts about 24 hours after chemo. Hang onto it for five days. Now, walk/jog 3 miles without warming up first. That provides the muscle/bone burns and aches, plus some breathlessness. Those are side effects from neuropathy, dying red blood cells, and general malaise. Finally, get a stomach virus for 2 days. Recover from it so that you’re not actively vomiting. But you still are staggering around, dehydrated, finding food hard to keep down. Most things taste as if you had a bad nosebleed. These effects start around the third day and last 4 days. Only by two or three days before you go back to chemo do any of these go away.

NOW, toss in a combination of constipation (rabbit pellets, no matter how much fiber you eat) and explosive diarrhea. Your hands get covered with your own feces in an effort to stay clean. You wash and scrub under your nails, only to find them flaking off. Every time you shower, you gasp for breath and your heart pounds afterwards because it is exhausting (though it does feel nice to be clean, especially around the poop area). The fatigue in my case is from anemia. Not bad enough to stop treatment, but maddening nonetheless.

That’s what it’s like. Every damn week, four or five out of seven days in my case. Some people have even worse side effects. It’s different for everyone, and I’m on an easier cycle than many. I don’t have mouth sores, for example. My doctor is very proactive on treating nausea.

So, feeling like this, shit still has to get done. Don’t think anyone is going to wait on you hand and foot. You’ll cook your own meals sometimes because you’re so hungry and weak, you’re willing to try anything, no matter how weird (I’m currently eating tofu slathered in soy sauce). You might have to cook for others, and the first time you feel bile in your throat because chicken and noodles smells so awful, you don’t know what you are going to do. You can’t whine and complain–“winners” and “fighters” don’t do that. Only needy shrews cry and refuse to get the jobs done. So, you shove your dwindling hair to the side and dry heave in the sink. Back to stirring the noodles. Somebody will likely fuss that you are only walking half a mile a day for exercise, you lazy creature.

People you thought were friends will send you “love and hugs”…yet nothing of substance such as a Walgreen’s gift card for all that Ensure and hemorrhoid cream or a takeout certificate for your family (who are, of course, starving because where’s our dinner?) A few will bawl right in your face, and wow, that makes you feel just awesome. (Err, thanks for letting me know I look awful and am sick?) True friends will fill your freezer full of food for the family or simply stop by with flowers or something pretty or a fun movie. They’ll listen if you want to talk about cancer…or never pressure you to mention it if you don’t. Others will say, “We don’t know how you do it! I couldn’t deal with this!” You’d be shocked at what you can handle. You have no choice in the matter.

Your house will go to hell in a handbasket. I don’t care how anal retentive a cleaner/tidier you are. Piles of dishes, piles of mail, piles of dirty clothes–it’s all part of the package. You’ll want to clean up around your bedside so badly, since you’re usually confined there on rough days, but then you’re gasping for air the second you start tidying, so that’s right out. Dust and magazines gather into cliques.

You desperately try to keep information about treatment and tests together in a folder. Then, your treatment schedule changes, or they want you there at 7:30 am (rather than 11:30) when you have an hour’s drive. Sometimes, providers fuss amongst themselves about what treatment you are getting, and why did it change, they ask, when you see a new nurse or resident? You have no idea. Your mind is still back in the waiting room.

Also, this whole time, you are wearing earmuffs. People’s mere words are hard to understand, much less string into sentences so you can construct a coherent response. You’ll get text after text after text after text. You’ll want to throw the phone against the wall. It’s probably just that people are checking on you with good intentions, but typing one more message with numb fingers is just too humiliating to contemplate because you can’t spell. Especially since you just noticed a wad of poo on your thumb.

You are going to scream at your kids and your partner/spouse at some point. To be fair, they’re going to be bit worried and pretty sick of you, too, with all the driving to appointments and you feeling like crap and not being the household organizer/cook/cleaner/mind reader or knowing why the checkbook and stamps ran away together in a sordid affair to some place you don’t know. My chemo hit at tax time this year. That was a hot mess.

But what about work? Gosh, don’t you wish you were independently wealthy. Because most of us are going to have to keep working at least part-time during treatment, to keep insurance or an income stream. You might have a nice boss and team, who send you thoughtful cards and emails and gift certificates. You might also have a crass boss or co-workers who sniff disdainfully at you the first time you show up with a steroid face and no hair, or ask you just when this whole thing will be done and over…because, really, there is no way you can actually do your job when you are an invalid. See, that’s a catch 22. You *do* feel decent some days and can work. And if you are like me, you must work. A good boss will meet you where you are, letting you take advantage of good days and lay low on bad days. An unkind boss will just be concerned about the bottom line–offering no quarter on deadlines, your mushy brain, or even your frantic emails asking for help. There will be silence and something akin to the sword of Damocles hanging around–will you still have a job after FMLA is over? Annual reviews still occur. Because you did the best you could, but some days, that meant writhing on the bed and dictating a reply to your spouse to send. My advice is if you have a supervisor you trust, let them help you. If you don’t trust them or don’t know them well, tell them as little as possible about your condition. Everything related to FMLA goes through HR, anyway.

And….my train of thought is now derailed. I think I’ve managed to drink enough water and eat sufficient yogurt to crawl to the shower. I’m sweaty and gross. Even though Thursdays and Fridays are my nadir, I put in a 6 hour day from bed, answering emails and phone calls. And so…many…texts. I think the dog might’ve snuck in and peed somewhere. Darned if I can tell whether it’s his or mine, though.

 

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Yes, a visit from Colin Firth would be great! Good luck on arranging that, though.

So, yearly mammograms, which every woman should do at age 40 or as otherwise recommended by your doctor, are a real-life version of The Hunger Games. The statistics are everywhere. Roughly 80% of the ladies who go in for a screening come out with a clear report. Even of the 20% who go back for a diagnostic workup, which involves more, ahem, squishing, and possibly an ultrasound (painless), about 90% simply had an unclear image; nothing is wrong. Ah, but you’ve done the math. About 1.8% (which works out to be one in eight women over the course of a lifetime (and don’t hold me to statistics, which change over time) will not get happy news. They may need more tests, such as a core needle biopsy, or surgery, or radiation, or chemo, or some combination above. So yeah, you go in and don’t wish anyone’s name to be pulled out by Effie Trinkett–but you sure as heck don’t want it to be you, either.

Congratulations, I won the local district Hunger Games this year. That makes me Primrose Everdeen, I guess. (And to think all this time I thought I was Haymitch).

I had DCIS (ductal carcinoma in situ) 14 years ago. Back then, a general surgeon did the work, and you got booted to the curb without any further testing, such as a sample of your sentinel lymph nodes, genetic workups (they really didn’t exist), or even radiation. In fact, I was back at work on Monday after a Friday surgery. People are now horrified by this, but I remind them: Back then, DCIS wasn’t even “real” cancer. My GYN arranged for me to chat with an oncologist that same year–and he concurred. Watch carefully, at that time, was the recommended course of action, along with the “new” BRCA 1/2 tests (negative). Things were fine for the moment.

I am scrupulous about mammograms, given my own history and that of my family. I was just a couple weeks late (early January instead of mid-December). The screening test went fine, and I heard nothing else…until over a week later when my doctor’s office called to say I needed a diagnostic view and probably an ultrasound if recommended by the radiologist. I went in without too much worry to the rural yet seemingly competent facility near my office, where I’d been going for several years. And…I got a rude awakening.

My PCP had sent me my complete report–we talked about it and agreed that the diagnostic repeat and the ultrasound were good next steps. I am not a radiologist, but I do know a lot about my particular body parts. So, things like “architectural distortion” or “micro-calcifications” are cause for caution, not alarm, since I’d seen them before in 2004. Right away, the well-intentioned mammographer was bothered by the fact that I had (gasp) read the report. It made her uneasy. Nonetheless, I cooperated fully so we could get good images. She told me to have a seat, and she’d send the radiologist my films.

“You’re sending them to a radiologist?” I asked.

“Yes–there’s no radiologist on site, so we have to email everything and wait,” she replied.

Wait I did. And wait. And wait. She kept the door shut so I couldn’t hear her calling and asking if the films had been read every 15 minutes (but moms have excellent hearing–it develops in the final trimester, I think). She was nervous as a flea. Finally, she opened the door and said I could get the ultrasound (US). Off I go to get that done. And of course those images are sent off, and I wait. ANOTHER HOUR. I’m packing up to go because this is getting crazy. The US tech comes to tell me that I can leave now. But that’s it.

“Do we have a BIRADS score yet?” I asked. The poor young thing looked at me as if I had two heads. I shifted gears because apparently I scared the hell out of her. “Okay, so, is there anything I need to know from the radiologist? Does he or she need to speak with me?” Answer: “Well, they don’t talk to patients. You’ll have to talk to your doctor. But he did say he was 95% sure this was nothing to worry about. You may need an MRI–you and your doctor can talk about it.” Thus, after four hours, I knew spit. I thought about tossing the Mammography Quality Standards Act of 1992 at her (along with subsequent research that says real-time communication between patient and radiologist is the gold standard with a suspected abnormality), but I was worn out and backed off. It wasn’t her fault. Within 48 hours, though, my PCP’s office called me back, apologizing she’d not been quicker–influenza had them all sick and still carrying a heavy patient load. No problem–I understood.

“I’m not quite sure this radiology report is, errr, as complete as I’d like,” she said. “For the ultrasound, there were no notes other than the fact they did an ultrasound. Also, there are no facilities here to do an MRI. I think additional imaging may be valuable. Is that okay with you?” Heck yes. I’ve been in academia long enough to read between the lines to know she meant, “Uh, Dr. Snape, the general radiologist, didn’t really do a great job reading your reports. You need someone who specializes in breast care.” But like I can’t say unprofessional things about my colleagues who take three hour lunches and 10 weeks to grade papers, she couldn’t exactly slag the lack of quality at the local facility. And so I pulled out the information in my phone I’d stored for the nurse navigator at the teaching hospital/major cancer center an hour away. She was marvelous and responded in five minutes. I was astonished. She set everything up right away, though she also had to “fight” to get my records.

Cutting to the chase, I went in the next week for more mammograms, another ultrasound, a core needle biopsy (it’s not fun, but honestly, it’s not the worst, either–ask for lots of lidocaine), and a marker placement. They found something, but couldn’t be sure what until the pathology came back. I went in four days after that (pretty fast timing, considering the weekend) to get the exact diagnosis: invasive ductal carcinoma (IDC, stage 1) with ductal carcinoma in situ (DCIS, intermediate grade, already solidified). The tumor is small (around 7 x 9 mm). They will sample the sentinel lymph nodes during surgery, and that same day of diagnosis, I got a genetic test for 28 markers which should be back in about 3 weeks. (I admit, I am dreading the “radiation injections” the day before the lumpectomy, sigh, which will show the surgeon, a breast specialist, which lymph nodes to excise). I was offered the choice of waiting until after the genetics came back or not–and I chose to go ahead with a lumpectomy and radiation, knowing that a final pathology and genetic report could tweak the outcome (possibly more surgery or perhaps chemotherapy, though good chances of not). It was caught early. Chances of survival and recovery are excellent, though I’ll be monitored carefully for recurrence since this is round 2 (completely different cancers, though, and on different sides. Wacky fun).

This all leads me to the title….what do you want if you are diagnosed with cancer? This sample size of one has the following suggestions for what I wanted/want/will want:

  1. You don’t want to drive 90 minutes to the specialty breast care clinic for your mammogram. It’s gas money, time off work, arranging child care, etc. I get it. I really do. So, it is okay to go to your local facility for your annual screening. ANY screening is better than no screening. But if you have a history or symptoms or anything feels “off”: Go to the specialty clinic. Go to where a radiologist reads nothing but breast imaging. Go there right away. Turns out the radiologist who read my initial films is not a breast specialist, but a generalist. He was reading CT scans of kidney stones and bone x-rays while, pun intended, squeezing my breasts into his busy schedule. This was a small IDC (though the DCIS was quite clear)–it needed an expert. There are a number of accreditations for mammography centers, so make sure yours has at least some oversight.
  2. Don’t let anyone tell you that you cannot have a copy of your records. HIPAA laws state that you can. You may be required to pay a small fee for processing or wait up to 30 days. But they are your records. If someone balks, ask for a patient advocate or ombudsman. Get the files and keep them in a binder. Take them with you to appointments. Ask questions. This is your body and your time and money. Be courteous and not a know-it-all, but ask if you do not understand what you are being told.
  3. Take a driver if you are having a core needle biopsy. There are no drugs involved that impair judgment, but you will be tired and sore after–and a long drive home is not fun. Also, take your partner or BFF to the diagnosis appointment following the biopsy. I almost didn’t, but I’m glad I did. He took notes while I stared at the doctor trying to maintain equilibrium.
  4. If you get a cancer diagnosis and face surgery, one of the nurses told me a good general rule: Take off one day from work for every hour the surgery will take. Example: Mine will be about a 3-hour procedure. She suggested taking off three days minimum to clear the anesthesia from my system, get the plumbing working, resting, and treating the pain. You may need more time if you do lifting or lots of manual labor. Obviously, depending on your surgery, you may need to take off much more time.
  5. People are going to react in one of two general ways: Sympathetic, but running away or not wanting to talk about it (don’t hold it against them; cancer is scary) OR Sympathetic and wanting to do something (even if all you want to do is sleeeeeeeep and not entertain–and really, folks, it IS about you. If you don’t want people around, say so. If you do, don’t be shy about retiring when you get tired). Give them something to do, if they ask: a) Leave a basket of laundry to be washed, dried, and folded/hung up, then returned; b) ask for a frozen casserole; c) ask for them to pick up your car, gas it, and clean it up before returning it–and maybe swing by the bank or post office, too; d) request unscented lotions, lip balms, socks (I got some awesome ones!), a fuzzy blanket, and/or cough drops–you are going to be cold (ice packs on those sensitive areas) and parched, with a dry, dry throat; e) request a couple of beverage tumblers so you can always have a cold drink at hand 24/7–I cannot begin to describe the overwhelming thirst; f) a gift card for books or music or whatever is helpful; g) assisting with child care is amazing (even if the ‘child’ is graduating high school, so this could be a meal or a gift card for them); h) bring over some movies or books or magazines, and i) offering transportation help.

And helpful people, please please do not be hurt or upset if the patient says thank you so much, but I’m good right now. It is not a personal affront; it just means they are coping with a lot and have a foggy brain. Asking them to make decisions or answer long questions on the spot is like asking a toddler.

What have been the hardest parts thus far? You’re thinking cancer, right? WRONG. For me, it’s been who to tell, how to tell them, and dealing with work (when I drive south an hour for my job and north an hour for cancer stuff–and routinely put in 50-60 hour weeks teaching, pulling data, writing reports, holding workshops, and even resetting passwords and dealing with a lot of complaints because yes, you do have to give your students some grades, and no, I cannot give you a pile of money for serving on a committee that is going to require about 7 hours of time, total, this semester. Sorry).

John Green had it right. When you tell the people you must tell, because they are your besties or your family, you don’t cry. You bite your cheek, pinch yourself, or stomp your feet to do anything but cry. Keep it simple and straightforward. For my son, the pre-med major, I made it clinical, discussing genetics and aromatase inhibitors. For the friends, it was here’s what’s going on, here’s what I need, and it’s all going to be fine (we hope). For work, where any given day I don’t get a bathroom break until 2 PM, and hahaha, forget lunch anywhere but my desk, I told my dual supervisors and kept it on point. I filed the proper papers for time off and gave them a heads up about how we might have to discuss some work from home or on our satellite campus near the hospital during radiation. For other colleagues I chose to tell, I made it matter of fact. I asked a few to help cover job-related tasks or meetings I couldn’t attend. And after 2 weeks, I think I am done with the telling and asking and talking part of this. It’s absolutely exhausting. I can honestly say I’m ready for the surgery just to have a reason not to answer the texts, emails, calls, or whatever. (Though still not excited about the pre-op radiation shots….ouch again, I say).

In closing, let me give one final cautionary tale. Beware the well-intentioned who do things like tell you icky stories of Great-Uncle Dave’s horrific, painful lung cancer, or how seaweed oil cured Grandma’s melanoma–and you need a bottle of that stuff rather than your prescriptions, or beat their chests in misery because life is so unfair (yeah, got it). They will also sometimes burst into fulsome tears and make your illness all about them. Back away slowly. Thank them for their concern–and get out. If you must, tell them that your doctor has a solid treatment plan or how every cancer is quite different. But you don’t need this dragging you down. Really.

I hope this has been helpful or at least interesting. Do you have questions or are you wondering what resources are out there? Feel free to drop me a line–I’m not a medical doctor, but I’ve accumulated a nice collection of reliable online sites. This is Andromache, wishing you the best if you or a loved one is also going through this mess.

 

I’m into an almost-three week cycle of escalating upper back pain, which reached an all-new level of agony about five days ago. I woke up around 3 AM with some of the nastiest pain I’d felt in my life, centered around two points. These roughly correlated, from what I see, with C7-T1 and down through T7. (I have a known bulging disk at C4-5, plus degeneration at C5-6-7 and T6-7-8). What set things off, I don’t know, but I’m going to chalk it up to being sedentary for a couple of weeks, prolonged driving, and sleeping in a different bed over the holidays.

Everyone wants to know…”What are you doing to help this? Did you know stretching/yoga/incense/tai chi/medication/walking/heat/ice/meditation/yak milk from Uruguay can help?”

Yes. People with back problems know chronic pain and what helps their particular pain. My pain is nociceptive, not neuropathic, a result of spondylosis (arthritic changes in the spine) and degenerative disk disease. It’s due to structural changes in my spine and muscles that result in inflammation. In 2008, I got significant relief from epidural steroid injections until I could no longer put off an anterior cervical diskectomy and fusion in 2009 for two herniated disks. It did wonders for me (C5-6-7 were fused with cadaver bone and covered with a plate), and I had no symptoms of problems again until early in 2014. A new round of doctor visits (initial with a new PCP, first ortho, second opinion ortho, and follow-up with PCP—so, about four  months of appointments) and fighting with insurance to get an MRI (after spondylitic changes showed up on x-ray). It showed the new C4-5 disk bulge, acquired cervical spinal stenosis, and degenerative disk disease in the upper thoracic spine. Luckily, my lumbar spine seems fine. I say that because most people do have lumbar troubles, and they are hard to fix.

What does the pain feel like? First of all, let me list some terms. Acute pain is the type of pain that is short-lived. For example, the pain you have after surgery or while passing a kidney stone is acute. It may last a few weeks to a few months and fade away. If it lingers for three-six months or longer, though, it could become chronic pain. I am in no way diminishing acute pain. It can be horrible; most people have either had a kidney stone or know someone who has, and many describe it as the worst pain of their lives. Labor pains can be similar. This is a good review of pain: http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/pain/types_of_pain.html and http://www.spine-health.com/conditions/chronic-pain/types-back-pain-acute-pain-chronic-pain-and-neuropathic-pain

Chronic pain is, frankly, misunderstood by many. Thankfully, fewer people today than 10 years ago consider it purely in one’s mind. It may come and go without warning. It may “flare up” and be a problem for several days or weeks, then wane, but it never leaves for good. My chronic pain on good days is around a 1-2 on a 10 point scale (the universal pain scale, which is most commonly used, calls this “Hurts a little bit”). It’s never completely gone, but I would say 60 days out of 100, it’s bearable, and I can walk, swim, write, knit, and cook without too many problems. I even jogged a bit this fall.

Of the remaining 40 days, about 20 are at a 4-5, or “Hurts little more/hurts a lot more”. Those are the days I take over-the-counter mid-day pain meds, instead of just AM and PM, and have a hard time getting things accomplished at home and work, but I do get them done. As I write, this is a 4-5 day, by the way. In fact, it’s taken me two days to complete my post, since I’ve been trying to stretch and be good to my back every half hour, attend two meetings, and deal with increasing pain.

Twenty horrible days out of a 100, or about 5 days every month, I have what some call “breakthrough” pain. This is pain that’s 6-7 or maybe an 8. I’ll tell you that for me personally, labor pain without medication was an 8; a kidney stone was a 9, and the worst pain ever, a 10, as in “I’m truly going to die” was about 12 hours post-op from a total abdominal hysterectomy. I was receiving acetaminophen and ibuprofen for pain, which was brutally insufficient. I told my family I loved them, I’d see them in the afterlife, and I was dying because no human being could survive that kind of pain, ever…except I couldn’t choke out the words. It was more an “Ughrwaghhh ahhohhhh eehs” than anything coherent. A good friend who is a nurse got the point across, and finally, I received something more appropriate for post-op pain following abdominal surgery.

On these breakthrough pain days, I sometimes have to miss work. I can’t drive. I take whatever over-the-counter and prescription medication I can, strictly according to the doctor’s instructions, but more often than not, I just have to lay flat on my back and wait for it to pass. Heat packs and hot showers help, but they are usually not sufficient to stop the pain once it starts. I worry about what people might think of me, just lying there, when there is “stuff to do be done” at the house, at my office, and for the holidays.

What does the pain feel like? Imagine someone takes a red-hot stiletto or sharp, thin knife, and then, the person slowly pushes that knife through your upper back, just above the bra strap or slightly higher. The pain explodes in a starburst pattern outward from the initial knife entry point, up to your skull, wrapping around your ribcage, and into your shoulders. The pain doesn’t stop; the knife keeps constantly stabbing you. The pain is intense enough to take your breath away. The muscles across your upper back yank themselves around in an effort to realign and help the pain, but of course, this only makes things worse. Your whole back dissolves into muscle spasms. The pain then starts extending into the lower back, which hadn’t been hurting before. No matter what you do, the pain…won’t…stop.

Now…during a flare-up, imagine this pain going on for days. You can’t sleep (and this perpetuates the vicious cycle because your body needs deep sleep to recover). You can’t use your arms because it hurts your back (for cooking, daily chores, driving, pain-distracting crafts, and so on). You can hardly communicate. It’s difficult to use the computer. You desperately want to do things, but you can’t—the pain is so intense, you can’t concentrate. You get snappish and irritable when your family can’t read your mind (yes, I know that is a totally unrealistic expectation, so take this with some gentle sarcasm). People’s feelings get hurt, and you try to explain your pain to them and apologize for being miserable and angry and depressed about feeling useless and why your house is a wreck, but you just dissolve into tears because not only can you not think straight, you can barely talk. This round, I’ve had so much pain, I’ve felt nauseated, which hasn’t happened in a while. (No, it’s not my meds causing this—it’s the pain. The nausea was there well before I even saw the doctor, and it has a very different “feel” than the nausea you have from a stomach virus).

I know pain is bad for everyone. I do not want to say men’s pain is easier than women’s. It’s not. It’s pain, and it’s horrible. However, for good or ill, in many homes (NOT all—I am simply making a generalization based on the several dozen families I know personally), the women hold the glue together, and they make the choice to try to keep on doing through pain crises. They sign the school notes, plan the day-to-day activities, and organize the chaos. They may have careers of their own, and yet they still pull a “second shift,” as Arlie Hochschild describes it, while also dealing with pain (http://sociology.berkeley.edu/professor-emeritus/arlie-r-hochschild).

If that works for your family, it’s great; I am not criticizing. All I am saying is that among my circle of friends, most women I know put their health concerns last (whether they are single or in a relationship doesn’t seem to affect this). They continue to work while sick, they shuttle their kids and their kids’ friends while hacking up a lung, and often, they have to do the stuff on their lists that needs doing, or else it won’t get done. Mind you, I’m not talking about frilly holiday decorations; I’m talking about paying bills so the lights don’t go off. They take care of their animals, their job obligations, and anything else that may come along, putting themselves and their well-being low in the priority list. I don’t know if this is an American phenomenon or not, but it seems omnipresent.

I do not want to dismiss what partners and friends do for those in a pain crisis, either. My spouse was so desperate to do something, he drove 90 miles to get my ortho records for my PCP when a fax would have sufficed. He did this, I think, because he a) wanted to help so badly and b) couldn’t bear to see me writhing in pain while we waited to go to my PCP (and he drove me another 70 miles there and back; did I mention rural health care options are challenging?) So, kudos to wonderful, helpful partners and friends—but ladies, really, it’s okay to give yourself a break. Feel guilty if you must (I did), but do take a day or two to recuperate if you can (and by that, I mean if you have sick leave. I spit on the corporations who make employees work while sick). I took two days of sick leave this week, but I kept my phone on, and I checked email from home. Thankfully, everyone is so focused on finals, I was able to rest most of the time. But I was angry I couldn’t work on holiday gifts or email my students or reorganize the bathroom, like I wanted.

Of course, the best thing to do is stop the pain before it escalates, if possible. Here is a list of things I do routinely/daily to manage pain. I want to make the point that I really have tried all the things I can:

  1. Stretching and not sitting too long. I try to get up and do basic stretches every 30 minutes. It sounds like a nutcracker is in the room.
  2. Heat packs and hot showers, a couple times a day. I always have an extra heat pack on hand, ready to go.
  3. Monthly massage. Massage therapy isn’t all pretty spas and woowoo music. My massages hurt, but then they heal, and I made sure my massage therapist and my orthopedist have seen each other’s notes.
  4. Take my medications regularly. I take 2000 mg of Tylenol, divided into two doses (AM and PM), 50 mg of Tramadol (one in the AM, and one in the PM), and 1000 mg of Naproxen divided into two doses (AM and PM). I also take calcium, a multivitamin with extra vitamin E/D/calcium, flax oil, fish oil, red rice yeast, and niacin. I keep both my PCP and my ortho up to date on all the things I take, including supplements.
  5. For this particular flare-up, I’ve also been given 5% lidocaine patches (great, but cost a lot), Robaxin (it’s okay—I’d call it “better than nothing”), a steroid dose pack (6 days of a tapering dose), and 50 mg amitriptyline (PM only, for sleep). These are just temporary measures. I am fortunate in the only side effect I have from prednisone is some insomnia, so I take it early in the day. I got Toradol and Decadron at my PCP’s office (wonderful stuff, but Toradol has the potential for kidney and gastrointestinal side effects, so its use is short-term only), which did help break the cycle for a few hours.
  6. Deep breathing and meditation a few times a week. I have a yoga program for my Wii, but many of the positions are, in fact, painful. I do some basics when I stretch.
  7. I just got a gel mat for the kitchen, and it has been helpful for times when I stand and cook.
  8. Voltaren gel: While only available with a prescription in the US, you can buy this on the shelf in Canada for about $8 a tube. I’ve found it’s good at bedtime, especially for aching joints.

Here are things I’ve tried that either did not help or did more harm than good (and remember, I am just a sample size of one):

  1. Ice: I know it helps some people, and that’s great. Heat/warmth is the better option for me.
  2. Neurontin (Gabapentin) and its cousin, Lyrica (Pregabalin): These are anti-seizure medications, used for treating nerve pain, post-shingles pain, and diabetic neuropathy. For some people, they work miracles, and I am glad we have them. I tried Lyrica in 2008 for a month; I was dizzy and gained some weight, but it did nothing for pain. I took Neurontin (300 mg, twice a day) for six days this past November, and I was a crazy person. I had hallucinations, I thought worms were crawling out my nose and ears, and I could hardly stand up. I cried, I laughed, and by day 6, we were all scared to death of how I was behaving. Our pharmacist helped me cut back the dose and stop it over a 48 hour period. Some researchers at the University of British Columbia published this article several years ago (http://www.ti.ubc.ca/letter75). Use of Neurontin and Lyrica for nociceptive pain (like my spondylosis) is still not well understood, I think. While I noticed slightly less pain on the Neurontin (possibly 20% less), I noticed a marked increase in pain when I stopped taking it. That was, in fact, about the time the current pain cycle started, but I can’t prove causation—there are too many variables, like holiday travel.
  3. Curcumin: I was so hoping this would help. I tried it for two months, and I noticed no changes at all. Again, it does seem to work for some people, and I have had good luck with supplements like fish oil and slo-niacin (e.g., I am open to trying supplements).
  4. Glucosamine chondroitin: Ditto, same as the curcumin. I tried it for almost six months and noticed no difference.
  5. Chiropractic: I used a chiropractor for hip pain after pregnancy, and I do believe it helped realign things. However, two years-worth of treatments (and a lot of out of pocket money) did not improve my upper back pain with lasting effect. My orthopedist actually said it was counter-indicated for cervical problems like mine, though he routinely suggests it to his patients for whom it might be appropriate.

I have two treatments that I use (or have used) which sometimes help and sometimes hurt or have no effect. These are:

  1. A TENS Unit: A TENS (transcutaneous electrical nerve stimulation) unit sends mild currents through electrodes that supposedly erode the transmission of pain from the nerves. It sort of redirects and rechannels the pain, or otherwise “tricks” the nerves into “distraction.” On certain days, it has been helpful. For this current flare-up, it made the pain worse, so I stopped using it after one 10-minute session.
  2. Epidural steroid injections: I’ve had three, total, over a 1.5 year period. It’s been almost five years since my last one. The first two helped tremendously. The last one didn’t really do anything.

Are any readers wondering why drugs like Vicodin or something similar are not listed here? Major law changes in 2014 restricted how opioid drugs are prescribed. Moreover, the DEA has dealt harshly with doctors who prescribe these medications and pharmacies that fill them. Rightly or wrongly, they created a lot of fear among doctors, pharmacists, and patients, even those who were judicious and used them for appropriate reasons.

I guess I don’t need to say that I am filled with loathing for people who abuse these drugs (both those who steal and sell them, as well as those who improperly prescribe them), and the media that makes them more frightening than they need to be (i.e. the “don’t ever take these because you’ll absolutely become an addict!” sort of panic). I do not want my pharmacist or physician being targeted in any way, but I can’t help but wonder if I’d gotten something in this class of drugs for a short period (twice a day for a couple of days), would I be feeling better now? As an informed consumer, I simply don’t know what to think. I found opioid pain relievers worked very well after my back surgery, and I only took them for about two weeks as my doctor instructed (i.e. one tablet every 4-6 hours for the first five days; then, cut that dose by half; then, lengthen the time between doses; and finally, at the end of the second week, take half a dose at bedtime if needed). I had no addiction or withdrawal symptoms, following those instrctons. TIME has this to say: http://time.com/3445728/painkillers-opioids-dangerous/ while Johns Hopkins says this: http://www.hopkinsarthritis.org/patient-corner/disease-management/benefits-and-risks-of-opioids-for-chronic-pain-management/, which is more pros/cons than scare tactics.

This leads me to things I’m either trying or want to try:

  1. More green tea. I drink a cup full daily at the present time and enjoy it.
  2. I’m looking into acupuncture, but I want to make sure I have a qualified practitioner—and we live in an isolated, rural area where I only found a couple of names within a 60-mile drive. I don’t want to end up in Smith’s Acupuncture, Fresh Vegetable, and Coffee Shop, if you see what I mean.
  3. Gin-soaked golden raisins. I know, isn’t that crazy?! But people swear by it. If you are in enough pain, you’ll try nearly anything. The People’s Pharmacy has a good article about this here: http://www.peoplespharmacy.com/2013/10/17/gin-soaked-raisins-for-fibromyalgiareally/

I normally write about 1000 words an hour, and I’ve been working on this off and on for about two days. It’s been hard to focus. As I close the first draft, I’m glad the day is almost done, and I’m going to see my massage therapist, hoping she can help (well, not as much as I’d hoped, turns out).

Does the internet hive mind have any further, reasonable suggestions, backed by studies and data and/or reliable sources? Andromache wants to know. But now, she’s going to do some more stretching.

Asperger’s Syndrome: It’s Not “Cool”—It Just “Is”

Watch network TV for 30 minutes in fall 2014, and chances are, you’ll see a show with an “Aspie” character. Some writers actually have their characters formally diagnosed with Asperger’s Syndrome (AS), but more often than not, they’re content with just having the person show “tendencies” of the disorder. People put all kinds of spins on AS—from using it to “celebrate not being neurotypical,” like that’s some sort of shiny toy, to excusing rude behaviors. Unacceptable! Among the best articles detailing this entertainment phenomenon is one that appeared here in the New York Times online: http://nymag.com/news/features/autism-spectrum-2012-11/

First of all, you don’t know if you have Asperger’s Syndrome unless a trained medical professional, such as a psychiatrist, has made a formal diagnosis. Anybody can be an asshole or have weird habits. Just because you are an introvert doesn’t mean you have AS. Second, AS is now lumped in with a range of conditions across Autism Spectrum Disorder [299.00(F84)] in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Some people may have a formal diagnosis in the Autism Spectrum Disorder (ASD) and little outward sign of it. For others, ASD affects every moment of their life to the point they will need daily assistance with a range of activities, including eating and speaking.

We have a teenager who has a formal diagnosis of Asperger’s. Yes, it came from a bona fide medical doctor who did a residency in pediatrics and psychiatry. There’s a comorbidity (fancy talk for an accompanying condition) of attention deficit hyper-active disorder as well. Our teen takes medication to help focus on schoolwork and other activities. Having had the diagnosis and quality treatment for seven years, which includes cognitive behavior tools in addition to medication, has made a huge difference in our family life. The teen, given that many of them are secretive, surly creatures, is fun most of the time (not all the time). He loves travel and can navigate his way around a big city as well as a rural back road. Yes, he’s quite smart and is working ahead of his peers in a couple of subjects. He’s also tender-hearted when it comes to animals and his family, even if he doesn’t always know how to show it.

Case in point: I dutifully got a flu shot and had known, typical side effects—mild fever, bone aches, and a raging headache. He wasn’t sure what to do to help, so when I asked him to find out about how long the side effects might last, he visited the CDC website and made the following pronouncement: “You’re having a robust immune reaction. Your T-cells and B-cells and natural killer cells are helping produce antibodies, and that’s why you have a fever. You do not have Guillain-Barre syndrome, in my opinion.” I think he said something else about a sort of mystical cell that was related to the Enigma machine, but it got lost in my delirium (Natural killer cells? Isn’t that a Woody Harrelson movie?) Fifteen minutes later, he presented me with a bowl of ramen noodles (something I secretly love but avoid due to the calories and sodium) and gave me a hug. Now, that’s some serious affection from this kid.

Yet for every sweet moment like this, there’s a pile of awkwardness. Forget team sports—although he’s quite competitive at board games. Out in the community, sometimes people talk about him right where I can hear them (so can he), especially people who are older and who have “traditional” views on parenting. “I can’t talk to [that kid]. He’s odd.” Or they keep prodding him to interact with them by asking rapid-fire questions, shaking their heads or interrupting when he doesn’t respond quickly enough. He’s honestly trying, and if he gets something out, it’s usually polite. But to fill the awkward silence, the people often answer their own questions. The teenager is utterly perplexed. (To be fair, I find small talk tedious myself).

Dating issues haven’t gone so well, either. After writing an email to ask her mom’s consent, he finally got the gumption to call a girl he met at camp and liked. He suggested they use their iPads and Face Time—except that she forgot to ask her dad’s permission to use his iPad. Dad comes onto the scene and yells at his daughter, who hangs up in embarrassment. My teen is left confused and hasn’t mentioned trying to call her back. We reassure him he’d done nothing wrong, and that perhaps he could email her, but he’s now gun-shy. Thanks, Super-Strict Dad—I know you are nervous about your daughter talking to a boy, but let me assure you, my son has no bad intentions with a damn phone call from 40 miles away.

One late Friday night, after watching the show Scorpion, which tries to make being super smart yet socially awkward seem like a hoot with perks (it’s totally not), he asked me, “Why am I different?” I took it literally and responded with the usual platitudes of we don’t know, we don’t have an explanation for what causes ASD, but it’s probably some unknown combination of genetic pre-disposition and environmental factors, blah blah blah.

“No,” he said. “Why do I see and feel the world differently? Why do I think in multiple dimensions at the same time? Why can’t I turn off the rational part of my brain and just accept the abstract?” Whoa. That was heavy for 11:30 PM, after I’d had a full week at the office. Why was his dad in bed already when this metaphysical discussion arose?

“I still don’t know the answer,” I replied slowly, “because although I’m a visual thinker like you, it’s not hard for me think abstractly. Part of it is age, education, and experience.” I paused. “But the bottom line is that I think you can use that type of thinking to your advantage, if you work hard at it, and do extraordinary things. It’s not going to be easy because the people who run the country, the corporations, and the education system don’t think like you. They’re going to put up barriers, like the stupid, badly written standardized tests you have to take at school. But hang in there. College is coming, and there, your ways of thinking will eventually be a boon.” That seemed satisfactory to him, particularly since he’s decided to emulate the Flash/Barry Allen as a role model. (We told him that Sheldon Cooper, Magneto, and Gollum were absolutely off the table).

Take this blog post for what it is: one family’s experience with having a teen on the autism spectrum. We strongly believe that Asperger’s Syndrome does not need to be the new “in” thing. So, let’s not make it the characteristic by which we largely identify people’s “hipness factor.” Would you tell someone, “Oh, you have epilepsy! That’s really awesome! I’ve always wanted a friend with epilepsy.” Or, “You’re bisexual—that’s so cool! I wonder if I’m bisexual, too? It seems like the ‘in’ thing to be right now.” Crap like that would make a lot of people beat you up, deservedly.

The bottom line: Asperger’s Syndrome isn’t “cool” or “trendy”…but neither is it “uncool” or somehow “wrong” to have it. It’s just a state of being. Don’t single out people with AS, either positively or negatively. Don’t try to tell parents of these kids how to “fix” them. Just let it be—and let them be. It’s all good…67.831% of the time.

I’ve actually got two novels in my hopper–and for some reason, Chapter Six always breaks me down. I don’t know why I always get stuck there. The current one, though, is coming together better than the one I’d been messing with for a few years (which was a bildungsroman cum Dark Percy Jackson; I felt like I had a cool idea, but I sure didn’t want to compete with such a great guy as Rick Riordan, even if my stuff was much, much meaner). The present novel has a general outline and a detailed concordance that is proving to be a useful tool. I have one more chapter of ‘setting up the world.’ and then I can get down to the crime(s) that pull in the main characters. I even have an ending planned, and the critter is doing a nice job of writing itself in many ways. I don’t want to say too much because I know people steal like crazy off the Internet. Suffice it to say, I am playing to my strengths…writing what I know. It’s a mystery set just before World War I involving  an interesting female protagonist and her lady’s companion (who is proving to be an unexpectedly fun character to write). And yes, there’s a love interest, but he’s more of a friend for quite some time. The crimes are not too heinous, but I hope they are ‘clever,’ and I am trying to be quite historically precise on every…tiny…detail. That’s involving a lot of reading and research on the time and place (1913 Vancouver), which turns out to be quite the hotbed of plot threads. How did we write before the Internet?? I guess we just made crap up and hoped no one checked too thoroughly on our work.

The concordance is vital to my writing. Since it’s historical, I needed to develop ‘mini-bios’ for all the characters with things like their dates of birth and any important events during their lives, along with a timeline that covers the year before the start of the novel. I got my hands on train schedules, immigrant records (for names), period house plans, 1913-era dress patterns, and even articles on how the earliest hospital x-rays machines worked. I’ve reviewed where missionaries worked in China, and on my last visit to Vancouver, grabbed all the materials I could on the police during that time period. Will I get an agent? Will I be able to sell this? Who is my target market? I’m trying not to worry about those things and simply write well. I’m thinking this is going into ‘historical mystery’ and hoping the current fascination with World War I’s centennial will give me some selling power. But…that means getting it written quickly, and that’s not happening just yet. I’m cranking out, on average, a chapter a week. I’ll post general updates here. My best friend is a superb writer and editor, which is good for me, and I have a few friends in the business that may give me a hand if I beg. All I want right now is to have the complete manuscript, sitting on my lap in hard copy, before the end of January. That’s my goal, folks, and I’m sticking to it.

I’ve hopefully concluded a 3-month contretemps with Choice Privileges. I redeemed some points back in June for an Amazon gift card. I waited the requisite 4 weeks–no card. I called and got the run-around, but was advised to wait 4 more weeks to be certain, and someone would follow up. It never happened. I finally called back again (waiting about 6 more weeks), got a bit more of a deflection, but finally, they agreed to reissue my points. However, they were quite grudging about it. “We’ve decided to reissue your points,” said the rep, “but only if you understand that this is a one-time only courtesy on our part, and that if you do use those points for a gift card that never arrives, we will not re-issue them again.” No thanks to me for being a customer. Nothing.

I told him that while I knew it wasn’t his fault personally, his script was terrible, and he needed to let his supervisor know that. A better response would be: “Ms. Andromache, we are sorry about the loss of your points and gift card. We are re-issuing you the gift card, now that we’ve investigated the missing points, and you’ll receive a tracking number so it won’t get lost. Our company policy is that unfortunately, we are not responsible for any losses in the mail, and I regret that it happened. I hope this card arrives with no problems. Again, we apologize for the inconvenience and appreciate your patience resolving this issue. We look forward to your next stay with us at a Choice hotel property.”

So, that’s a second hotel chain knocked off my list. I used to LOVE Holiday Inn Express…until they botched a very important reservation, where it was not just me involved, but a group of about half a dozen people, with no remorse, no apology, and no concern shown. I haven’t stayed at one of their properties in almost five years now. (The manager would not return my phone calls, and some poor desk clerk tried his best to help–it was the manager who incurred my wrath when she lied and said she’d talked to me and resolved the situation when I went higher up. That was nasty icing on the cake).

I’ve had the best luck with Hilton and Marriott properties for ‘regular’ travel (hello, I can’t afford to stay at Omni or Fairmont too often, both of which were amazing)–and both the Marriott and Hilton loyalty programs have thus far earned me rooms in some very nice places. Returning from a long trip a few years ago, a Marriott employee went out of her way in rural West Virginia to help us when my son got suddenly very ill; she contacted a local drug store and got us numbers for the emergency clinic, making sure we had ice brought to our room, and was just a genuinely nice person (it was one of the worst cases of strep throat the PA said she’d ever seen when we got to the clinic the next morning). Hilton/Hampton employees were particularly nice after the death of my father and during the settling of his estate. We got to know each other quite well since I was there for about a week. (I also need to say that the one time I did have a special need/request, it was honored, even if it was a bit odd–no feathers).

I probably should have been more polite to the poor guy on the phone (I didn’t yell; I just told him I thought their resolution wasn’t particularly customer friendly)–I realize this is beyond his control. But–his tone had no empathy; rather, it was perfunctory and blunt. Again, there wasn’t a single variation of “I’m sorry for the inconvenience.” Even if didn’t make any real difference in relation to the missing card, it would have been nice to hear. His script was more to the tune of “I have to reiterate to this lady that if a second card goes missing, there’s nothing further we can do.” I do think there is a way to say both–or at least sound like you are sincere. So–for the price of a $50 gift card, they’ve permanently lost me as a customer. Because I travel so much, people often ask me for my opinion on hotel chains. Wonder if he/they realized that I will be passing on their lack of customer empathy to all those friends and co-workers who ask me where I stay on my travels….Bazinga!